In Fiscal Year 2012, the NINDS supported $98 million of $154 million in Parkinson’s Disease (PD) research at NIH. As the primary NIH institute supporting PD research, the NINDS is responsible for convening related planning efforts. Major PD planning meetings held from 2000 onward are listed below. In addition to these larger planning efforts, the NINDS organizes annual meetings of the Morris K. Udall Centers of Excellence for Parkinson’s Disease Research and also develops additional workshops to discuss emergent areas of interest in PD and related disorders, such as genetics, biomarkers, and induced pluripotent stem cells.
To inform ongoing and future efforts in PD research, the National Institute of Neurological Disorders and Stroke (NINDS) is organizing the “Parkinson’s Disease 2014: Advancing Research, Improving Lives” conference, which will take place on January 6-7, 2014 at the Natcher Conference Center on the National Institutes of Health (NIH) main campus. Invited participants (including neuroscientists, researchers, physicians, public and private stakeholders) will assess significant challenges and identify the highest priorities for advancing basic, translational and clinical research on PD.
To accelerate the discovery of biomarkers for PD, the NINDS is establishing the Parkinson’s Disease Biomarkers Program (PDBP). The main goal of the PDBP is to develop biomarkers that will facilitate phase II testing of neuroprotective agents that slow or halt the progression of PD. Such biomarkers would provide objective measures of disease progression or disease pathophysiology that might be the target of a therapeutic agent. Since useful candidate PD biomarkers have not yet been identified, this program will include funding for clinical and laboratory based discovery projects designed to identify promising biomarkers for PD. Because sharing of data and biological samples will be a core feature of the PDBP, this program will also support a bio-repository and a data management resource that will coordinate all these projects and provide access to data and biological samples collected in a standardized manner. As a follow-up to the 2010 PD Biomarkers Strategic Planning workshop, this meeting convened a scientific liaison group to discuss specific strategies for the NINDS PDBP.
The lack of standardization in biospecimen collection has impacted the ability to validate newly identified biomarkers for PD, as well as the availability and application of biomarkers for PD clinical trials. Strategic planning for PD biomarker development will enable NINDS in collaboration with the PD research community to: 1) develop guidelines for biospecimen collection and storage, that can be applied across studies; 2) identify current roadblocks to PD biomarker development; 3) identify metrics for moving from discovery to validation; and 4) identify key tools and resources needed for PD biomarker discovery and validation. Workshop included: keynote sessions on the process of biomarker development – NCI, FDA and industry perspectives; industry and clinical research perspectives concerning obstacles in the path to PD drug development; analysis of clinical non-motor biomarkers for PD disease diagnosis and/or progression; analysis of neuroimaging modalities for development of PD diagnosis and/or progression biomarkers; and analysis of PD cohorts currently funded through NINDS or through Foundation support.
On November 13, 1997, the President of the United States signed The Morris K. Udall Parkinson’s Disease Research Act of 1997 into law (P.L. 105-78), which directed the creation of research centers for Parkinson’s disease (PD).The NINDS funded the first Morris K. Udall Centers for Excellence in Parkinson’s Disease Research through two initial Requests for Applications (RFAs) in 1998 and 1119.. In 2005, the NINDS initiated a full-scale process and outcome evaluation of this Centers program , following interest expressed by the National Advisory Neurological Disorders and Stroke (NANDS) Council and by the PD advocacy community. An independent data collection and evaluation was performed by Booz Allen Hamilton; the results were reviewed by a NANDS working group, which made several related recommendations that were subsequently implemented by the NINDS.
The 2005 NINDS Parkinson’s Disease (PD) Summit convened academic researchers, industry scientists, clinicians, and members of non-governmental organizations (NGOs) to assess progress, and develop future directions for PD research based upon the state of the field. Breakout groups were asked to assess progress in prevention and treatment research and the translation of these findings into therapies. There were five PD research topics of focus: Risk Factors and Prevention, Cell Implantation and Gene Therapy, Pharmacological Approaches, DBS, and Non-motor aspects of PD. At the conclusion of the Summit, the participants generated more than fifty specific recommendations for moving patient-oriented research forward in these areas which were prioritized to produce a comprehensive plan for PD research.
Scientists, patient advocates, and representatives of nine National Institutes of Health (NIH) components gathered to review progress made in implementing the agency's Parkinson's Disease (PD) Research Agenda. Originally released in March 2000, the Agenda described areas of significant scientific opportunity in Parkinson's research to be explored over the following five years. This meeting reviewed progress made towards accomplishing the goals set forth in the Agenda, identified newly emerging areas of interest, and prioritized future research goals.
Participants identified several timely themes for future research focus: emphasize translational research; better understand abnormal brain circuitry observed in PD; increase studies on non-motor aspects of PD; locate risk and susceptibility factors and identify physiologic, genetic and environmental biomarkers to aid in preclinical diagnosis, evaluate progression of the disease, assess therapies, and speed clinical trials while reducing their costs; pursue research related to gene therapy; and develop better animal models, particularly for dyskinesias and non-motor symptoms.
In 2000, at the request of Congress, the NINDS developed a five-year research agenda for PD. This working group on the cognitive and emotional aspects of Parkinson's disease was part of the follow up to that research agenda with the goal of obtaining advice and guidance on the identification of the unmet scientific needs in this scientific area. The working group participants focused on the following issues: circuitry, epidemiology, assessment, treatment strategies, potential clinical trials, and innovative research approaches for cognitive and emotional aspects of PD.
At a landmark meeting in November 1999, the directors and staff of the major components of NIH conducting Parkinson's Disease (PD) research, working together with patient advocates and nongovernmental organizations, initiated a planning process to ensure that extraordinary opportunities to move toward a cure are adequately supported and that critical obstacles to progress are addressed. In its report on the Fiscal Year 200 budget for the Department of Health and Human Services (HHS), the Congressional Conference Committee directed the NIH to develop a report outlining a 5 year research agenda for PD (Conference Report No. 106-479).
On January 4-6, 2000, the NINDS therefore convened a workshop including intramural, extramural and industry scientists, ethicists, and representatives from several PD advocacy groups who discussed an overarching agenda for PD research. The resultant meeting report covered seven broad topics. The first topic was research to improve our understanding of PD, including research into the genetic and environmental risk factors relevant to the etiology and pathogenesis of the disease; the cell biology involved in the life and death of nerve cells relevant to PD; and the nature and changes in neural circuits involved in PD. The second broad topic focused on research directly aimed at developing improved therapies, both pharmacological and surgical, to treat Parkinson’s disease. The third topic, briefly addressed, was outcomes-based research to provide evidence upon which clinicians can more scientifically select among existing treatment options for particular patients. The fourth topic was increasing the productivity of NIH’s research investment through selective use of centralized resources and other means. The report identified several ways in which progress could be advanced by NIH taking a leadership role to facilitate use of array technologies, animal models, data collection and sharing, the development and use of biomarkers, and support for high throughput drug screening methods. Fifth, the report discussed the need for research assessing the ethical issues underlying clinical trials and other ethical, policy and social issues presented by the search to cure Parkinson’s disease. Sixth, the report discussed the need for innovative funding mechanisms if the pace of progress is to be accelerated. Finally, the report provided professional judgment estimates regarding costs for implementation of this agenda over five years without regard to economic constraints or other competing priorities of the Federal government.
Last updated September 30, 2014